The moments you noticed they had changed: share your experience

[HarrietD]

Hi everyone,

We have a request from our Marketing team below

We’re privileged that so many of you share your experiences of dementia with us and each other on this forum - from the realities of just how challenging it is, to cherished memories with your loved ones.

We also understand how important it is that how Alzheimer's Society portrays dementia in our advertising is authentic and relatable. Wherever possible, we base our advertising on real stories.

With this in mind, we would love to capture some of your personal experiences to inspire our portrayal of dementia in future advertising, particularly if you have a loved one who is living with, or has passed away from, dementia. As difficult as it can be, we believe it is important to show the true reality of dementia, so dementia as a cause gets the attention it deserves.

Please share in the comments below the moments you realised your loved one with dementia was not acting like themselves. This could be things like not recognising important people in their life, a change in personality, or no longer being able to do things they used to love. Big or small, we are really interested to hear what poignant moments stick in your mind.

Your comments may be used to help inspire future advertising campaigns, and the team may reach out to you for further information. Thanks everyone.

 

[sdmhred]

I think 2 moments stick in my min:

1] The night of my brothers wedding. We were driving home from the reception, in fact we had literally pulled away. Mum asked ‘When are Phil and Peggy going to get married?’ She thought she had been at a church conference all day - not at her son’s wedding 😢😢She was convinced of this and couldnt be convinced. Some of my sister in law’s relatives had of course been there which she thought was ‘very odd - as why would they be at a church conference?

I tried to persuade myself she had drunk too much and was dehydrated. This may well have been the case, but that evening I cried as I realised we were no longer just looking at age related memory loss, but most likely the dementia her mother, my Granny, had suffered from.

2) 6 months later - we now had a diagnosis of vascular dementia and mum was living with me.

I had popped back with her in the car to my house and had picked up some pot plants to move in to her house where we were both now living. As I got in the car she said, ‘My Rachel (me) would like that plant’. This was the first time I realised I wasn’t me! At that point we were old friends in her mind - sharing university accommodation. My heart sank. I’m now used to It.

 

[update2020]

For us it wasn’t so much memory issues as other lapses in what I later learned to call cognitive skills and reasoning. For example putting on the kettle without first putting water in it, forgetting the difference between left and right, not being able to read a clock, or understand money. The changes were slight and insidious at first and it was years before we got a dementia diagnosis (but then he was very young so the GP assumed other things, like depression, first).

 

[nitram]

When travelling back from France, there were suddenly myself, my wife with LBD, and two daughters in the car.
Myself and wife in back, daughter driving with a copy of her in the front passenger seat

 

[SkyeD]

For me it was also gradual little things that soon mounted up, such as forgetting what day it was and asking the question "What day is it?" repetitively. Lots of, "Have I told you about ... " or, "I've told you about... haven't I?" when she'd told me at least ten times in the space of ten minutes. Constant verbal repetition came first I think, then loss of knowing how to do things such as using the washer/cooker etc - mum did remember how to hand-wash right up until she went into the care home, but she lost the ability to wring anything out. She forgot how many things needed washing so I went every morning to find the washing up bowl full of every bit of underwear that she possessed (even though they'd all been washed and dried the previous day). These are what I recall came first - then loss of hearing, loss of mobility, incontinence and total confusion.

 

[Jale]

For me it was in December 2014, Dad was in hospital and mum repeatedly asked him what he had had for breakfast. Dad passed away in January 2015 and Mum didn't appear to show any emotion at all, I thought initially it was shock, they had been married for 63 years, but then there were various "incidents" - Mum forgetting to order tablets, saying that a neighbour was coming into the house and going through all mum's clothes. I managed to care for her, she refused to see a doctor, but then fast forward to November 2016 and I finally managed to get mum to her GP telling her she was due a blood pressure check and then later we finally got the diagnosis of vascular dementia, and things moved on from there.

Looking back now there were possible signs before December 2014, Mum didn't want to go out, stopped watching soaps saying they were rubbish, but I think now she couldn't follow them - hindsight is a wonderful thing if only we could have it.

 

[Neveradullday!]

A few moments come to mind.
First hints - my mum started to get names of animals in the garden wrong, squirrels were sheriffs, pigeons were penguins (we used to have a chuckle together at that).

2017 She'd forget to turn the gas grill off.

2019 She stopped knowing how to even turn the gas cooker on.

2020 Summer - She started to think people on the TV in her bedroom were talking/looking at her.
She first asked me where I was (thinking I was a stranger).
End of November - she went to a neighbour's and got them to phone the police as there was "a strange man in the house."

 

[Lawson58]

Paranoia. We were starting to fight a lot, mostly about things that weren’t true. In the early days, I was hiding things from him and trying to steal his money. As it got worse, I was accused of having affairs and at one stage, he told his brother that I was refusing to talk to him.

At it worst he always use to say that he couldn’t do anything right and that I was criticising him all the time.

The other thing was his driving. It got so bad I insisted on driving when we were out together because he was quite dangerous. It finally took the report from the consultant to the licensing authority to get his licence suspended and he hasn’t driven since.

The thing is that it took me a while to realise that the paranoia was exactly that and not just having a rough patch in our marriage. It was three years before he was diagnosed as having Alzheimer’s.

 

[Izzy]

Paranoia. We were starting to fight a lot, mostly about things that weren’t true. In the early days, I was hiding things from him and trying to steal his money. As it got worse, I was accused of having affairs and at one stage, he told his brother that I was refusing to talk to him.

This sounds so like my own situation. Bill accused me of having affairs with various workmen who had been working in the house we’d just moved into. He said all of my family hated him in general he was changing from being a lovely calm and loving man to being really paranoid.

He lost things all the time and denied he’d ever had them. When he totally forgot his PIN number I eventually persuaded him to go to the GP and the diagnosis process started.

As we moved from the paranoia phase there were more signs but one I found hard was that he become over friendly with strangers. He would go up to people he didn’t know and shake their hands. He had been a headteacher so children were a big part of his life. As his dementia progressed he wanted to go over and speak to children we saw in the street. I used to walk with my arm linked into his so that I could pull him away from doing that. Not all parents understood it was dementia making him do this.

 

[Canna]

I knew things weren't right for a long time - couldn't put my finger on what, as it was such subtle changes. Not being as efficient as she once was (mum was always competent and organised), being vague about things like remembering to take medication, forgetting how to work the computer. Going from someone who was good with people, full of tact and consideration, to being completely unable to read a situation (my Dad unconscious on the floor, paramedics, first responders and the GP in attendance and mum deciding to try and talk to the paramedic about flower arranging). Starting to say nasty things about people, accusing people of stealing (she was adamant, and angry, that my children kept stealing her dog leads). Fabricating stories which she knew were true, even if the people who featured in the story completely denied them (a very detailed story about how she'd watched my son hand in his notice at work, and my daughter had been there watching with her).

All the sorts of things that someone who didn't know mum would put down to 'just getting older', and wouldn't be picked up by someone who didn't know her well. It was probably four or five years after I'd suspected something was wrong (and after a couple of mini-memory tests which were absolutely fine) that she started doing the stereotypical dementia thing of repeating herself in conversation. And because she didn't wander at night, the wandering wasn't obvious. It was only when she went out in torrential rain to try and get into the back of a Menzies delivery van because she thought it was an ambulance, and had to be escorted home by the driver and his wonderful wife, that this was officially noticed by social services.

Because the early stages were so much about gradually losing the logic needed to navigate ordinary life the way you always have in the past, a lot of the changes are really subtle, and unique to the individual. We knew that having an untidy kitchen and being slack about food hygiene was a sign of problems, but it sounded so trivial when you told other people. We would put all the things that concerned us about changes in mum into bullet-pointed lists, but we'd also include a potted biography of 'what mum was like before' when we communicated with GPs, social services etc.

From mum's point of view, getting a diagnosis of dementia wasn't going to change much (the GP didn't think that medication would be appropriate for her because of her age). But as a carer I finally felt that I was seen and taken seriously after 5 years of feeling that I was some sort of wicked daughter trying to get her lovely and independent mother locked away.

 

[Carmenjane]

In May 2019 my daughter died suddenly and OH and I had to travel to UK from our home in France. At the airport he was confused and anxious about the procedures and got lost coming back from the toilet – this was a man who had travelled all round the world on business and for pleasure both before and after we met. He was always the one who had the tickets and the passports, knew his way around, was calm and confident.

I put this – and his subsequent uncharacteristic behaviour – down to shock. Also, he is on the autistic spectrum and I was used to his quirks so I wasn’t too concerned, but I now think these were the first signs. In October 2019 he had a TIA which affected his vision and balance so again there was something else to explain his symptoms. He became forgetful, starting a familiar task and not completing it properly, losing tools, getting irritable. One day I came in from the garden and he was sitting in the kitchen which was full of noxious smoke, completely oblivious – he had left the grill full on and shut the door, the plastic handle was melting.

Eventually a close friend whose parents had both died with dementia told me he thought that was the problem. Although we were resident in France and fully covered for health care, I knew we had to move back to UK. We had an old house with a big garden and a boat, all of which OH had always been completely on top off, but now he wasn’t coping and some of the mistakes he was making were potentially dangerous.

The move (in October 2021) was a nightmare and I think accelerated his decline. He was diagnosed with vascular dementia and is now in a care home.

 

[Bunpoots]

My dad kept losing his car, forgetting where he’d parked it. He also asked me to come and mend his washing machine - it was a simple fix and something he’d normally have been able to do himself. I didn’t think much of it at the time and assumed he was struggling to get down and up from the floor because of his bad knee.

He’d forget that he was coming to have a meal with us and started to get lost driving in familiar places. I knew what was going on but chose to ignore it. However his GP asked him to bring me to an appointment with him after he’d turned up an over hour late for an appointment because he couldn’t remember where the surgery was…which lead, eventually, to a diagnosis of mixed dementia.

Strangely dad’s driving improved for a while as he lost the confidence (arrogance) in his abilities. But we decided it was time for him to stop driving when he asked my daughter to draw him a map so that he could get to his house from mine - a 2 mile journey with only 4 turns which he’d done many times before.

There were other things, mostly losing sequencing and logic, but the driving was the most obvious and worrying.

 

[Sarasa]

With my mum it was very subtle. She had always been very chatty and sociable but she started to want to be the centre of attention all the time. She would have a set of stories she would cycle through. So we'd have stories about work, stories about her parents etc etc. I found if I tried to talk to her about anything I was doing she didn't seem very interested. Looking back I think she couldn't really visualize what I was saying. At the time her memory was OK, so I didn't think of dementia until she started thinking the neighbours were stealing from her.

 

[jzw01]

In my wife's case I really started to notice when she wanted to start packing as we were moving "home". Home in this case was where she was born and spent her early life, happily living with her Grandmother while her father was a POW. Every day she said "when are we packing?". I had blamed her forgeting birthdays and our wedding anniversary as just "old age" before that but with hindsight this was just a portent of things to come.

 

[Kelvin20]

In the early days OH obviously knew himself something was amiss but would never admit it. Started writing everything down in a diary as reminders. Got a new laptop but could not get to grips with using it. Next he was constantly getting locked out of bank accounts as using incorrect information. Driving started to show he was losing mental faculties - would put on hazard warning by mistake and had no idea why other drivers flashed at him and other things such as sailing through roundabouts without paying attention. He had driven many miles in his working life and was a good driver so this was a real worry. The next thing was loss of language skills and not being able to express himself very well or do crosswords which he had enjoyed. Has now forgotten his address and names of family members. And so the journey goes on today trying to eat his breakfast cereal with a knife !

 

[HarrietD]

It's been really poignant to read through your responses so far - thank you all so much. Please do keep sharing your experiences.

 

[yoy]

I used to take mum to the supermarket in the car for her shopping. Once inside we'd go our seperate ways and then meet up later to go to the till. At some point I started to notice that I'd see her going down the same isle 3 or 4 times, so after getting my things had to find her and make sure she had everything she needed. In the end I had to start going round with her. And when it got to the point where I had to do nearly everything for her at home, I found she had a cupboard full of clingfilm.

Also, whilst sitting having a drink at the wake of a family member, mum said "I don't reckon much to this do!"

 

[maisiecat]

The first time I was really convinced of my husband's dementia was a few years ago. I had to go to the dentist and he was coming into town with me to buy a winter anorak. When he came back instead of buying an anorak( warm,waterproof and suitable for the bus) he had spent a huge amount of money on a designer winter coat, not waterproof or suitable for the bus and he was utterly baffled as to why I was annoyed. He wore it twice, we had never had a designer sort of life. Have just passed it onto my son-in-law for winter weddings,funerals etc.

The really worst time was when I became aware he was phoning a male friend behind my back. I came in and heard him talking to him in a lover like voice. He was a new friend from a local ukulele club(not gay). My kids got me through that one by joking about his man crush but he would turn down doing things with me to spend time with him. It phased out after a while. The strange thing is he wasn't the sort of person Pete would have ever liked before the dementia

 

[Rosettastone57]

With my mother in law, it was very subtle at first. She had had underlying mental health issues all her adult life and had always been a difficult, nasty controlling person . As a result family members didn't actually realise for a long time that there was more going on than her personality. She had always been totally self absorbed and her memory had been fine. But 3 events stand out that brought our attention sharply into focus.

2014... 1. she asked me in June what arrangements I had made for Christmas Dinner next week.

2 . she asked who owned the alleyway at the back of her garden....there wasn't an alleyway

3. She said she never watched TV as there was never anything on she liked. We realised later, this as because she could no longer use the remote control.
She was eventually diagnosed in 2015.

 

[321Penguins]

My mum was 84. She was taken ill in June 2019 with a perforated ulcer and sepsis. She had emergency surgery with only a small chance of survival but she did recover and after three weeks in hospital she came home. She lived in our granny annex and after my dad died in 2012 I was her carer - she had severe osteoarthritis. My first sign that there was something wrong was when we got to the car and tried to get her in. It took over half an hour for her to stand up from the wheelchair, turn round and sit in the car - and the same again when we got home.

She had a reablement package from the hospital but refused to engage with them, insisting that I wanted to do everything for her - I didn't! She was obsessed by someone she had been in hospital with, desperate to find her, to get in touch and then became convinced that she had died.

Over the next few months I really struggled with her care and made a nuisance of myself at the GP's begging for help and asking for a Carer's Assessment. Then at the beginning of March 2020 a care package started - two calls morning and evening which made my life so much easier. A fortnight later the pandemic hit and we stayed home. Husband was on furlough, my two single daughters were home from work and school and we had a great time. Mum was hardly ever alone and we spent hours together.
At the end of the summer one daughter got married and moved out and the other daughter went to university and I realised how trapped I was - I couldn't leave her for more than hour. If I was on the phone she would press her emergency alert button. I would run out to her to find that she had dropped the tv remote/she wanted the loo "No rush"/her phone wasn't working. Even though she lived in my garden each visit to her could take half an hour.

She had always been such a sweet person, always seeing the good in everyone. But the carers were moody and rude. She could hear people talking about her outside her door. Someone was phoning her in the middle of the night and putting the phone before she could answer. (I checked the phone and no one had called) My dog had barked all night and kept her awake. (The dog hadn't left my side all night) And then the phone calls in the early hours started. She would tell me that she was awake and dressed waiting for the carers to come and it was too late for breakfast so would I come and do her lunch. Even with a Gro clock (blue, with the moon for night and yellow, with a sun for day) she didn't know if it was day or night and couldn't look through her bedroom window.

Then over the course of a fortnight in the summer of 2021 several things happened that really shook me. Mum was used to having her breakfast in bed. It was something my dad always did for her and when he died I did the same. I would take her her breakfast and the daily paper and put the tv on for her in her room then when she was ready I would help her dress and help her to her arm chair in the living room. When the carers started she no longer had breakfast in bed and she really missed it. The family were home for the weekend for my husband's birthday and we decided to have breakfast together to celebrate - husband had to go to work that afternoon and the family were travelling. We decided to cook in the granny annex so mum could be with us and I cancelled the carer for that morning. We talked about it for weeks and I promised I would bring her breakfast in bed that morning - I knew she wouldn't actually want to eat what we were cooking. So I went out to do her breakfast and found her half dressed because she didn't want the carer to find her as she was! She had forgotten overnight that the carer wasn't coming.

The next thing was that a good friend, probably the only one who had seen mum through the pandemic (part of our "bubble") took me aside and told me I needed to put boundaries in place because she was becoming more and more needy and I needed more help than the two visits a day that we had. She could see that mum was deteriorating because she saw more of her than most people and mum couldn't keep up the pretence for so long.

One evening I was with her as usual (I would cook dinner, take hers and mine and eat with her and watch tv with her until the carer came to put her to bed). My son rang and rather than take the call in another room I put him on speaker phone so that she could be part of the conversation, I looked over at her and she was sitting with her head in her hands crying and saying "I'm so lonely, so lonely. I don't want to be alone." At this time I was with her for an hour in the morning, an hour in the afternoon, three hours in the evening and every time she called me in between - probably ten calls a day on average.

A few days after that her fall alarm sounded and I ran out and found her naked on the floor in her ensuite, faeces all over her and all over the floor. My husband and I couldn't lift her and we were afraid to drag her because of the condition of her hips and knees so we called the ambulance. I sat with her and tried to clean up around her as much as I could. The paramedics came a few hours later and dragged her (respectfully - not a criticism!) out of the bathroom and sat her on the bed. They couldn't find anything wrong and left. As I was cleaning up the carer arrived, took one look at her and said we should call the GP out. I talked to the GP and told her that the carer thought mum had had a stroke. She told me to call the ambulance back and to tell them she wanted mum taken in for a full geriatric assessment.
We said that we were happy to have her home but we would not be providing personal care and she was assessed as needing 4 visits a day. While waiting for the care package it became clear that she didn't have the cognition to make decisions about her safety and she transferred to a rehab unit for further assessment and from there to a care home.


TDR: My otherwise sweet and loving mum became paranoid and unreasonable, she had audible and visual hallucinations and could not follow simple instructions (to get in and out of the wheelchair) and could no longer follow drama on tv.